Hi I'm new here

[Angelzig]

Hi

I keep reading posts on this forum so figured it was time I actually joined in! I keep finding this becasue I'm doing 'Google research' before I see a surgeon next week. My story goes a bit like this.....

I think I first started with Crohn's when I was 15 (approx 12 years ago). Went to A&E with "appendicitis", had appendix removed even though it was OK along with some Lymph nodes. But then the pain kept coming back! On and off for years and years and years, but always put down to something else, IBS, stress, gynae pain, even, I jest not,:ywow: an STI! (for the record I didn't actually have one). Anyway, 3 ish years ago I had a big flare, lost loads of weight constant pain, diarrhoea, rectal bleeding and the Drs sent me off for more tests. About 6 months later I was eventually diagnosed. Put on Pentasa and azathioprine but I didn't get on so well with that so it was stopped. Two months later I was in hospital needing IV steroids to bring down the inflamation. But things improved and I've kind of been OK ish for the past couple of years. I had some issues with 6mp bringing down the immune system too much, so thats in the bin as well!

Fast forward to now. I've had weird pain for a few months high up under the ribs on the right side. Had upper GI endoscopy, Ultrasound and finally MRI. My Dr thought gall/kidney stones or gastric issues. MRI showed a significant stricture in the ileum area, and that is all he can see that is causing the pain (referred pain or something). So now I'm waiting to see a surgeon because the stricture is scarring (probably from all those years they were trying to tell me I was stressed)!

So it would appear surgery of some sort is on the cards and I wouldn't say it's a bad thing. I get pretty much constant pain these days (achey/crampy) with stabbing pains in my right abdomen, to the side of the belly button. I feel so full and bloated after eating that I'm eating pretty much liquid food with some low res stuff when I need to chew something! Getting really bad nausea if I eat the wrong stuff and feel exhausted.

So thats my story. Thanks for reading even though its all a bit boring! The strange thing is that Crohn's does take over your life at times and you just feel like a list of symptoms and treatments (see above)! People who don't have it don't understand, even my partner (much as I love him). I'll hang on in there and see what happens next.....

 

[Astra]

Hiya Angelzig
and welcome

Your story mirrors mine in a way! I was allergic to Aza and 6MP. I've got strictures in TI too. I spoke at length to my surgeon, he won't operate, yet.
My team decided to try a biologic first. I've started on Humira, first loading doses last week.
If it fails, it's surgery for me too.
Are you in the UK? If so, NICE guidelines dictact that when other immuno suppressants ie Aza have failed, you'll meet the criteria for Humira or Infliximab.
Talk to your consultant. IMO and it is my belief, surgery is a last resort unless I'm knocking on Death's door!
Lotsa luv
Joan xxx

 

[Angrybird]

Hello and welcome to the forum.

Just to confirm when you came off the Pentesa and the Aza were you then put on any other meds? When were you started on the 6-mp and how long after this did you then have issues with it? If you are struggling with food it may be worth asking your doc about going on some special shakes for a while as these will go through the narrowing in your bowel better, I had to go on these leading up to my op for a stricture in 2011. I would also agree that you do need to be speaking to your doc about alternative meds to try because even if you do have the op this does not mean the crohn's is fixed and they need to make sure they keep this settled afterwards the surgery to avoid you flaring again. They will also need to start keeping an eye on your vitamin levels, it is is common with crohn's to have deficiences in this area and the risk of this goes up when parts of the bowel start getting removed.

Wishing you all the best.

AB
xx

 

[Angelzig]

Hi

Thanks for the replies.

Yes I'm in the UK, lovely Lincolnshire in fact. I'm not quite sure which road my Dr wants to take, because to quote him 'there is nothing more medically that can be done for the stricture'. I think I'm going to see the surgeon regarding this and see what they want to do, and then go back to Gastroenterologist regarding the rest of my gut! It's a pain here because medical and surgical teams are very separate, although I know that they have a 'review' meeting every so often when they discuss cases (I know this because I requested a copy of my referral letter, and it said that my MRI had been reviewed at a medical/surgical meeting).

I don't know much about the biological therapies, they have not been discussed as yet. I think a lot of people on these forums use Humira to deal with strictures before opting for surgery(?), but this is not an option I have been offered, and, to be fair I don't know enough about to start demanding it from my Dr!

So I'm just waiting-and-seeing for the moment, but I will find out more when I see this surgeon guy on Wednesday. I do get a bit control freaky and want to know what they know, like NOW!

It does feel like I'm a 'case' (well I am, possibly of the 'basket' variety , but it's not the point!), that they all have an idea what they want to 'do' with, but they haven't relayed this info to me yet.

I think I keep rambling on because the uncertainty is bugging me, and I am getting quite nervous!

Thanks again

HenXXX

 

[Angrybird]

Please keep us updated on how you get on, even with surgery the docs will hope to be able to do this via keyhole and in my experience this is not too painful and there is hardly any scarring on the tum - you can only see my belly button one at the mo because the baby is pushing it out.

 

[Angelzig]

Just a quick update. I saw the surgeon yesterday and they are going to operate to remove an 8cm stricture from the TI and they are going to take part of the large bowel as well. They are aiming to get me in before the end of March.

 

[Franceshop]

hey i dont have a crohns dx but my pains are exactly lile yours, i can control the pain if i dont eat or eat soup or i can tollerate a sandwich but not a meal. i had my gallbladder removed in oct, but still have this pain. i'm exhausted and even finding im getting shakey And my hear is thumping out my chest despide being on a beta bocket to hepl with my arrythimia. I think i have a stricture, waitig on the mri of small bowel.
it discusts me to read how long people have been ill before they finally get a diagnoses. Have they explained what the surgery involves? thinking of you xx

 

[Angelzig]

Hi Franceshop. How are your bloods? exhaustion, shakes and arrythmia can be symptoms of severe anemia, which can be caused by Crohn's. It can take a while to get diagnosed, I found actually harder if you are young. I've known older people go to GP and they get rushed off for tests ASAP.It's good that you are getting an MRI, thats how they found my stricture and they can show up all sorts of things.

All the best xxxx

Update on earlier posts, I saw surgeon on wednesday. He said I need surgery and he wants to get it done soon, I didn't anticipate how soon. Phone call today saying surgery booked for next Friday, Eeeeek! (I have been studying 'surgery' threads all day!)

 

[Franceshop]

My goodness that was quick indeed, sometimes it good if its sprung on you, gives you less time to worry, my gall bladder surgery was a bit like that! hope it goes well, keep us posted xx

 

[Angrybird]

Wow, that is quick. Hopefully though this will get you on the path to feeling much better. Please keep us updated when you can on how things are going.

 

[Astra]

Blimey!!
I wish you lotsa luck n stuff, fingers crossed this brings you health & happiness
xxx

 

[Angelzig]

I've posted in the surgery forum too, but just to let you all know I had surgery 4 weeks ago. Surgery went well, but the nursing care in the hospital was terrible! I keep having weird dreams and flashbacks (don't know if this is normal, or I'm just weird).

Anyway, I do feel much better in terms of diet, but energy levels are an all time low. No follow up appointments til May and June, so I feel a bit stranded!

Best wishes to you all XXX

 

[Angrybird]

Glad you are mostly doing well With regards to your energy levels I would perhaps speak to your GP about getting your vitamin levels checked, especially your B12 as it is common to be deficient in this with crohn's especially after an op like yours and fatigue is a symptom of a low B12 level.

 

[alex_chris]

I've posted in the surgery forum too, but just to let you all know I had surgery 4 weeks ago. Surgery went well, but the nursing care in the hospital was terrible! I keep having weird dreams and flashbacks (don't know if this is normal, or I'm just weird).

Anyway, I do feel much better in terms of diet, but energy levels are an all time low. No follow up appointments til May and June, so I feel a bit stranded!

Best wishes to you all XXX

I had surgery in 2003 to remove strictures. About 2 feet of inner intestine was removed.

It's good that you feel better and yes, nursing care in hospitals can be terrible...

What kind of meds did they start you on? If you don't have an appointment until May, are you even on aza or mp6 or any biologics. Not doing any long term drug treatment after surgery is kind of silly, after all you don't want any new inflammation.

Re energy levels, did they provide you with any nutritinal supplements (e.g. nutricia fortimel?) to help you with weight etc.?

In any event, I remember even with supplements, aza, sport etc. it took me 6 months or more to get in good shape and somewhat remission after my surgery back then.